NDIS and Aged Care - 24/03/2021

24 March 2021



I rise today to speak on Appropriation Bill (No. 3) 2020-2021 and Appropriation Bill (No. 4) 2020-2021, which are of course about the government's priorities. This government has failed to prioritise some of the most vulnerable people in our society and their carers. I want to talk today about aged care, the NDIS and carers. I want to start by sharing the story of Angelina Giorgio and her sister-in-law Tania Giorgio from Canberra.

Tania came to meet with me in 2019 to talk about Angie's situation. She was living in a dementia ward in aged care here in Canberra. Angie has catatonic schizophrenia and has had a stroke. She was in this dementia ward, despite being only 59 years old and not having dementia. She was mostly bound to her bed and was lucky to be taken out in her wheelchair once a week. When I talked to Tania about this she said that she was basically told, 'You need to accept that this is life for Angie now and she will die here like this.'

She had been approved for a supported disability accommodation package. Part of the reason Tania met with me was that she was concerned that at her upcoming assessment she would not get sufficient funding for this to become a reality. Tania has been a fearless and tireless advocate for her sister-in-law. In writing to me and being in touch with some other great advocates in the ACT, including ADACAS, her situation has been improved.

In February I went and met Angie at her new home in Canberra with the shadow minister for disability, Bill Shorten; the shadow assistant minister for disability, Kimberley Kitching; and our shadow assistant minister for carers, Emma McBride. It was heartwarming and fabulous to see Angie in her new home. Her condition has improved so much since being there. She has been feeding herself a bit and brushing her teeth. We chatted with her about things. She has even been doing a little bit of cooking herself. She has her own little garden she can go into. She just seems so much happier.

This is exactly what the NDIS is supposed to be about—innovative solutions. She's living in a townhouse with support from CHC Canberra. They were able to have this innovative solution where she has around-the-clock care and support in her own home. She doesn't need to be in aged care. She doesn't need to be in a group home. This is exactly the innovative solutions that were supposed to come out of the NDIS. But it took so much fighting to get there and it should not be this way. Everyone should be able to get these things and they shouldn't have to wait so long. If not for a carer like Tania, who, at great personal cost, advocated for her sister and never gave up, this wouldn't have happened. I wanted to put this story on the record because it says so much not only about the NDIS but about aged care; and I want to talk more about that.

The NDIS, under this government, is not being implemented properly. It is not delivering the choice and control that was promised. The latest issue is the proposal of independent assessments. This is raising incredible concern in the disability community because it fundamentally destroys that choice and control people are supposed to have under the NDIS. I spoke about this in the Federation Chamber earlier this week. In sharing my speech, many people with disabilities and their carers from Canberra have got in touch with me. I want to read some of their comments to give a sense of the distress that is out there about this. Julie said: 'I have never been so made to feel like a beggar for funding and assistance as I have since the NDIS. I am a carer for my 26-year-old daughter and I'm sick of hearing how generous NDIS is for giving me funds. You guys changed the funding model and now we have to jump through hoops to get what we rightly deserve. The worst bit is that my daughter's daily life is dictated by people that have never met her and have no idea of her needs. It's jobs to the people who make decisions, but for us it's our lives.' Jasmine said: 'I have been so psychologically damaged by the whole NDIS process I can't even deal with them without having severe panic attacks. The supports I receive are life-saving but the hoop-jumping and never-ending stress that the NDIS puts participants through is cruel and cold-hearted. This government that's in power is a disgusting blight on politics and a stain on Australia'. Jessica said: 'On behalf of my baby son, who is an NDIS participant, thank you. I was so hopeful for his future to be born into a time of the NDIS. He is thriving with regular therapies. I am now very worried that independent assessments will result in a reduction in his funding and that he won't have the opportunity to reach his full potential, that a reduction in therapy will impact his ability to become a thriving independent adult who is able to provide meaningful contributions to society and to participate in paid employment to feel fulfilled with his life'. Helen messaged me and said: 'As a mother of two young men with complex disabilities, one of whom has significant impairment caused by autism, I can see how these changes have the ability to take away the decent life we have worked so hard to create for our boys. I am crying as I type this. Please do all you can to help others understand what is at stake if these changes are allowed to occur without significant modification.' And there were many more comments.

This is indicative of the fear that is being placed on people with disabilities trying to deal with the NDIS at the moment. And this is not how it should be. I'm on the NDIS committee and I hear from people all around the country about these issues. And unfortunately what we are seeing is that the approach is around cost-cutting. The approach is this disgraceful attitude that somehow people with disability don't know what's best for them and are trying to get something that they are somehow not entitled to. They are after the supports they need to live their lives—bottom line. We need to be listening to them, and these independent assessments should be scrapped.

I want to move on now to aged care. The aged care royal commission recently handed down its final report, with 148 recommendations to fix aged care. Aged care affects us all. Our parents, our grandparents, our partners, our friends—any of us—could one day end up in aged care. Many people would have seen Hamish Macdonald reduced to tears on Q+A about the fact that people are in fear of going into aged care. We should not be in fear of going into aged care. It should be a place that people go with dignity and for the care that they need in their older age. Instead, under this government we have seen $1.7 billion worth of cuts. In response to the aged-care royal commission report, we did see $500 million announced, and we welcome that. But we need a serious response to this in the budget. This absolutely needs to be addressed. We have 100,000 people on waiting lists for home care at the moment, and we have seen 28,000 people die while waiting on these lists. It's not good enough. This government has been in power for eight years. It's time to get this right. We really need to get it right.

I also want to take this opportunity to thank the people who have brought forward their stories and those of their loved ones to the aged-care royal commission. I want to share a story as well from a constituent of mine about her parents. She has written to the Prime Minister and also sent me her letter. Her father passed away in 2019 and her mother last year. They were in an aged-care facility in Brisbane. Her father had a wound that was mismanaged and allowed to become necrotic, and this contributed to his death. It is horrific for people to see their family members, their loved ones, in these situations. Her mother passed away last year. In the final month of her life, she suffered abuse and lived in fear. My constituent has made a complaint to the Aged Care Quality and Safety Commission, but she doesn't feel that it has been dealt with and it's time for changes to be made in that facility for the benefit of other residents. She's written to the Prime Minister and cc'd me. I just want to read some of that letter. She says: 'I have reached my wit's end in dealing with the nonresponsive, obfuscation, disinterest and lack of accountability of the aged-care industry and the ineffectiveness of your own Aged Care Quality and Safety Commission. I am therefore humbly writing to ask you add your power to my voice and restore justice, meaning and purpose to the lives of my late parents. In their lives and deaths, justice, meaning and purpose was denied them by the facility. Despite my representations to them and to the ACQSC, this continues to be the case.'

Then she's written to me, saying: 'In the preceding context, I request that the recommendations of the royal commission into aged care be fully considered and legislated by parliament. My parents' legacy is that future aged-care residents are protected by robust federal legislation with severe penalties for clinical failures, false written records and bullying behaviour within nursing homes.' This just needs to happen. These are our loved ones—our parents and grandparents. We need to get this right.

I want to say about that as well that, while the findings of the royal commission are nothing short of horrific, shocking and completely unacceptable, for those of us who've had a personal experience with aged care, unfortunately, they are not surprising. We know that these things are common. I want to talk a little bit about my grandmother, Joan Handsaker, and her own experience in aged care here in Canberra. My grandmother was a wonderful woman, wife, mother and grandmother. She was a nurse, a formidable tennis opponent and a talented artist. She was and remains an inspiration to me. At the end of her life, she lived with dementia. She lived with us for sometime but eventually had to go into aged care. I'm not going to go into the details, but suffice it to say that many of the most horrific things that have come to light I saw happen to my own grandmother. I know what that's like. For my mother, this was one of the most painful things that she lived with.

I want to share a bit of a story because it points to some of the policy responses. I want to talk about staff ratios, the need for registered nurses and the need for better treatment of our aged-care workers. My grandmother was in a dementia ward with eight other women. We were told that the ratio at the time was one staff member. That must have been a policy of the home that she was in because people would be surprised to know that there actually are no ratios for aged-care staff. We have ratios for child care, classrooms and hospitals, but not for our older Australians. So there was one person there with those eight people, and, at some times of the day, that might have been okay, but at other times—at a mealtime, for example—that is not enough to care for those people. My mother would go in there at least once a day, usually twice a day, to help with the care of my grandmother. I remember sitting there at mealtimes. The meals would come out and many of the people could not feed themselves. There was no-one to help them and the meals would be taken away. Then someone would say, 'I need to go to the toilet,' but someone else would be taken, so they would have to say, 'You have to wait.' Then people needed to be put to bed, and my mother would end up helping the staff to put the other residents to bed because there simply was no-one there to care for them.

New staff would come in, and these were the most passionate, dedicated, wonderful people, who wanted to spend time talking with the older people and making their lives brighter. But, as soon as they had been there a little while, it became clear that they could not do their jobs in the way that they wanted to because there were simply not enough staff, and either they would leave or they would just do their best. But that was the crux of the issue—not enough staff, not the proper training, not registered nurses around to deal with the issues of wound management and of abuse that was going on. That absolutely needs to change.

Before the royal commission report came out, Labor had announced an eight-point plan. In that plan, we included staff ratios and 24-hour registered nurses. These are recommendations of the report. It is absolutely time that, as a nation and as a parliament, we prioritise aged care. We need to prioritise people with disability. We need to prioritise older people and their carers—people like Tania and people like my mother. It is the most selfless task to be a carer, and carers also are neglected by this government. The informal care is valued at $78 billion a year, but carers receive only a fraction of that. They give of themselves, and we should support them.